Improving patient informed consent for haemophilia gene therapy: the case for change.
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ABSTRACT:
SUBMITTER: Woollard L
PROVIDER: S-EPMC10032461 | biostudies-literature | 2021 Jan-Dec
REPOSITORIES: biostudies-literature
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Improving patient informed consent for haemophilia gene therapy: the case for change.
Woollard Laurence L Gorman Richard R Rosenfelt Dakota J DJ
Therapeutic advances in rare disease 20210101
Adeno-associated virus-based gene therapy points to a coming transformation in the treatment of people living with haemophilia, promising sustained bleed control and potential improvement in quality of life. Nevertheless, the consequences of introducing new genetic material are not trivial. The perceived benefits should not minimise the challenges facing patients in understanding the long-term risks and providing a valid and meaningful informed consent, whether in a research or clinical setting. ...[more]
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